Thursday, December 25, 2008

The holidays I am not very fond of. Multiple reasons why, but we won't get into that. BUT I think I got the best holiday gift I've gotten in a long long time. It was so unexpected, and I don't even think that the person who gave it to me realized.

But in the past couple of days, I keep looking at it. Re-reading it.When I first got it, I read it and was teary when I was done.And when I read it days later, I still get weepy.

Here is just a small, little tid-bit of the email I received from Daniel's speech/augmentative therapist. What she writes in incredibly cool (in my book) but so incredibly nice because she didn't need to write anything at all. Completely unexpected, and from the heart.

"I just had to write to say again that Daniel did so great yesterday. Some of my kids just clam up when there is a visitor from school, or they spend most of the session wondering why someone from school is here with them in therapy. Not Daniel! He only had a few perplexed looks, but continued to do his excellent job with his eye gazing, identifying concepts, using the communication device to answer questions and to play and using his yes-no cards and signals (I absolutely love how he picked up the head shaking for “no” – that to me speaks worlds about his potential because he picked that up on his own without anyone having to specifically teach that)."

It is such an awesome feeling to have someone else see Daniel for WHO he is and not WHAT his diagnosis is. She does not judge him. She works beyond what I would ever expect to help Daniel reach his highest potential, and I will be forever thankful to her for that, and for caring about my son. (some of her work here and here).

She believes in Daniel, she teaches Daniel his ways to communicate, and what a wonderful "voice" she has given him.

Tuesday, December 23, 2008

Daniel has started this little thing we call his mini-meltdown. I haven't gotten it on the video camera yet but as soon as I do I'm going to put it on here.

Years from now, I will show people (his high school girlfriend) and it will haunt Daniel throughout his adult life! You know what I'm talking about? Those silly little embarrassing things you did as a child and you want to crawl under a rock every time it gets mentioned? Yes sirree, that is what I'm going to do.

I've also come to the realization that Daniel (and Daddy) watch too much TV. Although to come to his defense, it is somewhat educational!! Regardless whatever the show is, as soon as the credits start to run at the end of the show, Daniel starts with the mini-meltdown. The biggest boo-boo lip comes out and he starts crying inconsolably. This lasts for about 60 seconds until the next show comes on, or until Moose A. Moose starts talking about Zee and what items match or are different on the screen! Then life is good again and we can all be happy.

As Lonnie says, "Daniel, you need to realize there are commercials in life!"

Saturday, December 20, 2008

Never fails. When we have something planned, it always has to snow like its never going to snow again. Schools were closed and people getting stuck on every side street. Needless to say, the EEG got canceled and we have to reschedule.

So, Lonnie shoveled for hours. We use to think our driveway that holds 4 cars across was pretty nice. Shall we ask Lonnie what he thinks of it now?!?!

Daniel and I decided to make M & M Christmas cookies. We got a mason jar filled with the ingredients as a gift that Daniel did at Preschool. We also decided to try a Pumpkin Roll.

Monday, December 15, 2008

For people who don't know anyone or have never experienced a seizure, they are pretty scary regardless of the degree of severity. In fact, they are so scary that as an adult who has witnessed seizures in my child, I have horrible dreams about them. When its your child that has the seizures, you are in constant fear that at any moment it could all happen again. Its a fear that rears its ugly head every time there is the slightest fever, the littlest bit of teething. But what is really scary, is that they can come on without any warning signs like a fever. They just happen. They don't just happen when you're in the comfort of your own home, nope they can happen at school, social events, walking from one room to the other. They just appear, and there is nothing you can do to stop them immediately.

Daniel has high potential for seizures. His brain during the developing stage when I was pregnant didn't form the correct way. Because of the brain malformation, his potential for any type of seizures are possible. From the little ones that some people can't really notice, to the absent seizures to the big ones called Grand Mal. Generally people when they hear of someone having a seizure they think about the persons arms and legs flailing about, crying out and falling to the ground. Not all seizures are like that. Some are very subtle, its just a twitch of the eyes, or staring off and coming to, not sure what just happened, you've lost some time. Whatever type they might be classified as, they are scary to the person who is experiencing them. Most of the time doctors must perform an EEG to see the brain waves, and hopefully during the time of the test, will catch the movement you believe to be a "seizure".

Daniel's first and only type of seizure so far (knock on wood) have been Infantile Spasms (aka West Syndrome). These rank up there with the grand daddy of seizures. They cause many horrible side effects, and if not controlled can cause a child to regress to infant stages. Sometimes they lose the ability to eat, they cause the brain to be damaged beyond what you can imagine. The brain fires when its not suppose to, causing the brain not to be able to do what its mean to do which is learn.

Along with the damage the seizures are causing, add onto that the medications that you have to give to your young child to attempt to control the seizures, that can stunt the proper development. Most of the time, not just one medication does the job. Most kids are on a "cocktail" of drugs in hopes to stop the seizures from happening multiple times on a daily basis. Daniel was first put on Klonopin and Topomax, not a good mix for Daniel, he continued to have seizures. Then Vigabatrin was used and fortunate for Daniel and us, it worked. Daniel was one of the few children to be on a "mono-therapy", meaning one medication alone stopped his seizures. This worked for about a eighteen months with no seizures. Then out of nowhere they popped up again. See you're never safe. We tried upping his dose, adding on Zonegran. Nothing was working. So it was the mixture of Vigabatrin and ACTH for 6 weeks. This seemed to do the trick. Fast forward to now, and we are completely off all seizure meds. Scary? you bet!

The reason I am on this seizure topic is that we are fast approaching our Friday appointment to get another 24 hour VEEG. As much as I hate this test with Daniel getting all traumatized by being strapped down to get the electrodes placed properly and constantly watching the video monitor to look for weird brain activity, I like them because it makes me feel safe for a short period of time. It confirms that what I think are seizures, aren't really ( I hope!) Now is about the time I start to get anxiety about the upcoming appointment. What if there is seizure activity? I know we'll just have to deal with it, but it has been so nice to see Daniel un-medicated. Not on brain altering medication. And it will be a testing of drugs because Vigabatrin is used for Infantile Spasms, not the other types of seizures.

For those who don't know much about what happens during a seizure or what it is exactly, here is good little video of it. Take a couple of minutes and go through it, even if you don't know anyone with epilepsy. Just on the off chance you meet someone some day and you need to understand what is going on. Very educational.

Wish us luck on Friday, put us on your prayer lists, rub the budda belly, whatever it is you do for luck. Hope that this EEG turns out good, and there isn't any activity. That it is the same as the last one. Clean of seizures.

Sunday, December 14, 2008

Although Daniel doesn't like Santa Claus, he likes the gifts he brings! The RO Rotary Club threw a Holiday party for the Special Needs Kids at his school. Daniel did not attend the party (fear of Santa) but got the really cool gift above. He loves sitting by himself and playing, and wouldn't look up for me to take his picture.The photo above is of the "Merry Christmas Children's Book Swap" gift that he got from Tanner. The deal was you had to send a holiday themed book along with a few little gifts for the child to open. Daniel had a good time opening it and playing with his new stuff with his big sister. By the way the airplane stamp is awesome for Daniel to hold and do stamping. I love it. The book "Snowman at Night" was a big hit too!Here we have Daniel with his new mastered "pouty, boo-boo-lip". Do you all feel sorry for him? This is his way attempting to get out of doing therapy, putting his toys away, or taking a nap.Here, he lost his battle against falling asleep while watching cartoons! Believe it or not, he is sick again! I've lost track of how many times he has sneezed today! I'm not kidding, he sneezes and everyone goes running towards him with a tissue! His little eyes are all watery, he's all stuffy, and sneezy.....uugh!

Tuesday, December 9, 2008

People working with Daniel generally learn things quickly when it comes to his communication skills and his intelligence.

You need to WATCH Daniel. He is non-verbal. If you're not going to take the time to look at him while you are asking him something, you're not going to see his answer.

He communicates with his eyes and his facial expression. Eye contact is a must when talking with Daniel.

Daniel knows how to use switches and buttons to communicate. Yes he has problems moving his arms sometimes. Give him a little extra time and you will see he knows what you're asking and what his answer is, just give him the time to get his body to answer the way he wants it too. It takes many more and different muscles to get his arm to move than it does for you!

Don't assume just because he is Spastic Quad that he is mentally challenged. He is not. Daniel has a very unique way of knowing if you are being fake. (So do his parents!) Don't TRY to pretend you care if you don't. Just stay away from him then, we don't need your bullsh*t. Don't waste his/our time. We have nothing to prove to you. You are no body that means anything to Daniel's future. We will find someone else to get us to our destination and Daniel's success.

Daniel is very smart. I am not just saying this because I am his parent. Ask the people who have been working with him for years. Ask his doctors. Just because his body outwardly doesn't cooperate doesn't mean that his brain isn't working.

When you come into the picture and basically "read" about Daniel in your paperwork and reports. No it doesn't read well. Have you never heard the saying "Don't judge a book by its cover?". Well, same goes for Daniel. Don't judge Daniel by medical/educational reports. Have an open mind and talk to Daniel. He understands you. You don't need to speak loudly, he isn't deaf, he is non verbal.

If you're walking into Daniel's life and you think you've already got him pegged because you read some where that he has a brain malformation, seizures, and spastic quad cp so he isn't going to do much. Turn around and walk back out the door you just came in. Because you are now OFFICIALLY not invited to meet the coolest kid you'll ever know. You miss out on the chance to see some really awesome accomplishments. And most of all, you just plain and simple don't get the opportunity to have Daniel in your life. Goodbye.

Hopefully what you'll learn from this experience is that just because someone is labeled a certain way doesn't make them less of a person. Doesn't make you better than him. You aren't and you never will be.

Friday, December 5, 2008

While Daniel is off at school for 3 hours a day, I try to fill up my time so that I keep busy and don't think about what he is doing at school. I still have a hard time with him being there, and me being home.

There is and always will be that insecurity there of "is he being taken care of" the way I would? Like I have said before I absolutely LOVE his teacher, and so does Daniel. Well Daniel went back to school today after being out since before Thanksgiving. I felt some comfort because Ms. M (his teacher) had some things for me to do today for the classroom. Well we went in and there is a sub today!! Ms. M. is out sick! UUUGH, so I am obviously not staying there to work because no one knows what I should be doing! I so wanted Daniel to go back to school when Ms. M was there because I didn't want him to be scared. And had I known she was out today I wouldn't have taken him to school! I know that is horrible, but I have some sense of security when she is there. Hopefully she feels better soon.

I do know that today when he is there he will be with both the OT and the PT, and they both seem to really like Daniel too! I know I work myself into a tizzie over nothing I am sure. But you always hear those horror stories that happen to special needs kids. And besides Daniel being a special needs kiddo, he is also non-verbal which sucks twice as much because he can't tell me if anything is going on. YET- when he gets his augmentative device and learns how to use it, he'll be able to tell me many many things and I'll know what is going on in the cute little head of his!

Anyways...back to keeping busy while he is gone. There are blogs that I check, there are medical searches, medical equipment & therapies that I look into all the time. Well today I was looking at Signing Times. If you don't know who or what "Signing Times" is then follow the link. We got hooked on these when Daniel was about 18 months old. He loves them and so do I.

Unfortunately we don't have the whole set but the ones we do have are awesome. We have Baby Signing Times Vol. 1 and most of the first collection that we have picked up at mom to mom sales and such. We're hoping to get the next collection soon. They keep his attention and he completely understands when I do the sign what I'm saying. Daniel can't do the signs yet because of the CP in his arms/hands but I don't care. He is understanding and learning regardless. For anyone looking to buy a really cool holiday gift for kids...these would be it.Sounds like I'm doing a commercial for them! LOL really they are very cool.

Alright I got off the subject again (kind of!), while I was there I came across a song that was written by Rachel Coleman who created the videos. She writes all the songs for the videos, but this song is kind of for grown ups, and the words really struck home. Its called "Shine" check them out! (Scroll half way down the page in the "shine" link and you can hear the song). If you'd like to see some of the other songs and lyrics follow the link. (Songs)

Sometimes I see you stuckFor such a long timeA daily nothing newPretend I don’t mindWith lists of things you’ll never doUntil somehow you doAnd you do — you do — you shineThe days and months and years,they run togetherIs it just one day? Or is this forever?You’ve taught me in your lifetimeMore than I’d learned in mineAnd you do, you do, you shineShine Shine Shine Shine ShineShine your light on meShine Shine Shine Shine Shineeveryone will seeShine Shine Shine Shine ShineI’m so glad you are mineAnd you’ll shine in your own timeWell, maybe I’m too close to see you clearlyOr is it now my role to simply believe?You’re just one of those mysteriesThat may never be solved in timeBut you do — you do — you shineAnd Sammy will do what Sammy will do when Sammy is ready to do itAnd Trevor will do what Trevor will do when Trevor is ready to do itAnd Lucy will do what Lucy will do when Lucy is ready to do itAnd they’ll do it in their own timeYeah, they’ll Shine Shine Shine Shine ShineShine your light on meShine Shine Shine Shine ShineAnd everyone will seeShine Shine Shine Shine ShineI’m so glad you are mineAnd you’ll shine, and you shine

Hopefully I don't get in trouble for putting them on here! If you're from Signing Times, just send me an email and I'll remove! :)

As of the past couple of weeks, my cute little even tempered angel has begun to give his opinion. And he isn't quiet about it!

In his 3 1/2 yrs. I can count on one hand ever having to tell him "No". He wasn't very mobile so he wasn't getting into things. He doesn't hit. He's never been a biter. He didn't cry about anything. If fact if he did knock things off the table we were happy about it because he was using his arms! So we would hardly tell him "no" when we were just happy that he was doing it!

Well, now that he is using his Pony walker more as a means of transportation from one room to the other. There is no stopping him now! He use to stay where I was, now he ventures off on his own AWAY from me. He likes to take off towards the back of the house when I'm in the front room. The back room is where the ramp is, the fireplace (he cant get to it but likes to watch it),the Christmas tree, his keyboard and his power wheelchair, among many other things. Well obviously him being in the back room and me in the front room (there are 3 rooms that separate us) isn't going to fly with me, so I sneak and peek to make sure he is doing OK.

So yesterday he goes into the back room and calls me in his way, so I walk back there and he is standing at his keyboard so I turn it on. The keyboard happens to be located near the Christmas tree. After a few minutes of playing with his keyboard Daniel decided that the Christmas tree looked fun to play with. So I pulled him OUT of the tree and told him very nicely "No Daniel" and I promptly got the biggest boo-boo lip known to mankind. I walked him back over to his keyboard and I went into the kitchen. After about 5 minutes I can hear Daniel still playing the keyboard but it sounded a little odd, so I snuck back there to see what was going on.And there was Daniel standing in his walker with one hand in the Christmas tree and one hand stretched out playing the keyboard. "Daniel, your not suppose to play with the tree" and I get a look over his shoulder and a devilish grin.

I said OK, if you're going to play in the tree you have to come into the kitchen with me. I take him by the hand and we walked into the other room. Not in there for more than two minutes and he is pulling open the drawer! Puts his hand up on the counter top trying to reach things. What I discovered rather quickly is Daniel's arms are working better and he is taller and more interested in exploring things. All this adds up to danger in the kitchen. He is tall enough to reach the top of our gas stove and the dials. NOT GOOD! Another instance of "No, no Daniel" and a massive boo-boo lip.

Another example, when its time to come out of the walker. I have to stand behind him while unstrapping. If he doesn't want to come out he throws his body back and screams, makes his body as stiff as a board. He throws a temper tantrum. He has never done this! It was quite a shocker.He is also doing this when I tell him its time for a nap!Where did my little angel go??? I now have Mr. Independent who does what he wants when he wants!

Thursday, December 4, 2008

I decided not to let December get me down.So we are on the fourth day of the month, and I am attempting to maintain an even keel.So good things...not holiday related is what I'm writing about.

Lonnie is finally back to work from being sick. And the "sick couch" is now for everyone!

Daniel went to therapy yesterday with Lonnie while I was at home "illin'".This was very nice because Lonnie got to see how well Daniel does with Ms. Linda & Ms. Carol.

We have gotten three hours of ABR in each day of the month so far,which is quite an accomplishment if I do say so myself.

Daniel is walking ALL over the house in his Pony walker.I believe the ABR is doing some good things. He just seems generally stronger. Before last month there was no way Daniel could walk in the rooms with carpet. Now he pushes himself up over the lip between wood flooring and carpet. Granted it isn't as smooth sailing on the carpet but it definitely gives his legs a really good workout!

My niece had her 4th child on the 1st of the month.So we welcome a new little niece (she now has 4 girls!) She takes after me!

Now for the really cool news.

We will be getting Daniel's new manual wheelchair this month.Nervous and anxious to get it. We will no longer in the Kimba seating system. The Kimba looks like a high tech stroller. Now he'll have a chair that people hopefully won't stare at him thinking, "Why is a big kid sitting in a baby stroller?". Don't get me wrong I LOVE our Kimba, we just need to make it better for Daniel, and because he is growing up so quickly....

This chair is very cool. And when we were looking for a chair we were looking for something that when he is in it, people see Daniel first and not the chair. The chair is very lightweight (titanium) so it is very easy for him to propel. We will be working on him learning to propel himself. I believe it will weigh about 20 lbs total, and comparing that to the Kimba, much easier. But we have also got the handles on it for us to push him until he does learn to do it himself. This is kind of what it will look like but again with different seating, more support for his trunk and a removable headrest.

I am hoping that everything goes well and we have it by the end of the month. The chair is a Ti-Lite base but he needed just a tad bit more support than the typical seating that comes with the Ti-Lite. But that can always be switched out when he gets stronger in his core with the ABR.The Ti-Lite is very cool because Daniel will be at the same level as his classmates. I think this is going to be good. Although I am sure we will find some things we don't like about it too. But all in all, I can't wait to get it. And as you can tell....Daniel loves it.

Monday, December 1, 2008

Let me start off by saying...."I HATE December"Yes I know hate is a very strong word and not to be used lightly, so again I say "I HATE December!"

Let me explain why.Its not that its just the most commercialized holiday month known to the frickin' world. Although that is a good one to start off with. It just sucks when all this month means is having to spend outrageous amounts of money on gifts. Gifts that people probably won't touch much after a couple of weeks! I suppose if we had lots of money my thoughts on this would be different. The stress factor just stinks too!

Its the cold and the snow. Yes the snow is beautiful when its falling, and the ground is freshly covered with all the whiteness. But try driving in it. I absolutely get a pit in the bottom of my stomach when I have to drive in snow. Yeah, I grew up in Michigan you'd think I'd be use to it. I'm not! I tend to be overly cautious and people in Michigan think they are indestructible so they drive like butt-munches!

Then its the season where parents become stupid. I think its just a given, that all parents regardless if you are the parent of a SNK or a typical child. People, if your child is sick, don't send them to school or therapy. Just because you don't want to stay home from work to watch your sick child, or your tired of hearing them whining so figure you'll send them off for someone else to take care of...NOT COOL! Also, for those that are sick....stay home, don't spread all your germs to us innocent bystanders, what did we ever do to you?!? Yes I'm bummed that Daniel has missed a week of school, along with a week of therapy sessions. But guess what? I don't think its fair to bring him when he isn't feeling well, we won't get any productive therapy out of him. Plus I have now gotten Daniel germies all over Daniel's therapist who will pass it to the other "immune suppressed" children they treat. They will also take it home themselves and pass it around their families (and miss more therapy sessions because they are sick or a family member is sick!). Now wouldn't' that be a wonderful gift to give them this holiday season? NOT!

Lonnie and Daniel are still sick. Lonnie was running a fever of 102.+ on Monday so needless to say he stayed home from work. Daniel also stayed home from school again. He still has a boogery nose and a little cough. I managed to keep Daniel away from Lonnie most of the day in case what Lonnie has isn't what Daniel had! All in all it was still a productive day and we were able to get in 3 hours of ABR! YIPEE !!

We're probably going to get kicked out of therapy for missing so much but I just don't like the idea of spreading the germs all over the place. But we are doing things at home along with the ABR, we are walking around the house chasing each other, we are doing flash cards, working on feeding (getting him interested in food again), potty time, and lots of hand work with the splints.

December also sucks because this is the time of year when my mom use to be making her holiday gifts of Christmas candy and cakes, and since she passed away a little over a year ago, its still a difficult time. Holidays just aren't the same with the family...seems that everyone is going their separate ways and stuff. It also sucks because another year is gone, another year where I look back to see the progress or regression that we've made. And wonder if all this work is doing anything at all or if we'd be at this point even if we weren't doing all the therapy??

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